The official RLS Awareness Day is held on September 23rd to coincide with the birth date of Professor Karl-Axel Ekbom the Swedish neurologist who first described Restless Legs Syndrome in 1945. The Awareness Day has been celebrated in other countries previously, however 2018 will be the very first year that this event is officially celebrated in Australia.
There is so little known or understood about RLS and that needs to change so the theme for the 2018 RLS Awareness Day (RLSAD) in Australia is “EDUCATION”. This is an opportunity to raise awareness and share information about RLS with your networks, the general public and also the medical community.
To help raise awareness and educate people about RLS we would like to share stories and thoughts written by people suffering with RLS. It is really helpful to show medical professionals, researchers, and other stakeholders stories from people affected by chronic health conditions like RLS. Without real stories they have no idea of the impact it has and the great need to do more for people with RLS. It doesn’t have to be a whole life story. Even just a few paragraphs can be powerful. We can also help edit it for your if you don’t feel confident about writing. If you struggle to know where to start, start by telling people what a typical day is for you. Tell people what seeing a doctor is like. How hard was it to find a doctor that understands? Have you actually found a doctor that understands RLS or is your experience still a frustrating one? What does it take to get any kind of appropriate medical care? How supportive are family and friends? How does RLS affect your work, school, social life etc. What do you want people to know about RLS?
If you would like to share your words to help raise awareness please email your piece to [email protected]You can remain anonymous if you wish.
1. Write to your local media about RLS and the RLS Awareness Day. Tell them why raising awareness is so important. Share our Media Release with them.
2. Make a short video or take a selfie and share it with your RLS awareness message. Share it on social media and YouTube with the hashtag #RLSAD
3. Share our updated RLS Factsheet on social media and via email. You can also download a copy and share it with your doctor.
4. Write a story or share your thoughts with us. We will be sharing stories and thoughts written by people with RLS on our website and across our social media to help raise awareness. You can remain anonymous if you wish. Send your story or thoughts to [email protected]
5. Share the stories written by people with RLS (see below) to help raise awareness of how RLS effects peoples lives.
6. Change your profile pic to the image on the left and encourage friends and family to show their support by doing the same.
7. Follow us on Facebook and Twitter and interact (ie: like, share and comment) with our posts. The more interaction with a post the more Facebook and Twitter will show it to other people.
8. Share the RLS Awareness Day images below on social media and via email with your RLS message.
Cheryl has written a heartfelt letter to her dear departed mum who had RLS for years. Cheryl has RLS too only she didn’t know how much her mum suffered until it was too late. Read more here
"I’ve had RLS for over 20 years but for most of that time, I
didn’t even realise that my condition had a name. Many nights I’d walk the
floor whilst my family slept. I’d wake up tired. I was constantly tired. I
would often function in a zombie like fashion. I was irritable and angry all
the time. I think it made me a terrible mum. More than once I put my family’s
life at risk while driving sleep deprived but I just didn’t know how badly it
was affecting me. I’ve been sleep deprived for years now and it’s taken a toll
on my health. I now have a heart condition. RLS has robbed me of so much of my
life." Read more from Meryl here
"...Emotionally I feel “broken”. I've developed anxiety and insomnia. I’m cranky (from pain and exhaustion). I snap at my husband because I resent how well he sleeps. It effects every relationship. Family and friends get sick of hearing about it so they don't ask how I am. I feel as if I'm double my age. Years of medications plus fridge raids in the wee small hours and the medical fact that you don't metabolise properly when you don't sleep have caused me to become obese. Not to mention how very hard it is to exercise when feeling hopelessly depressed..." Read more from Vicki here
"There are still so many doctors and other people who think RLS doesn’t exist and it’s all
in my head. If it doesn’t exist then why am I pacing around and around in the middle of
the night trying to get some relief from the constant crawling, tingling sensations in my
feet and hands that build up to a jerk, stop and then start all over again every 15 to 20
seconds?" Read more from Karalyn here
"RLS still affects my ability to get to sleep and stay
asleep. Yes, Sifrol takes the edge off, but there are still evenings where I am
pacing the floor and my arms ache if the medication has not kicked in. The days
that I’m ache free are rare. It is frustrating for my husband when I toss in
bed and stamp/pace the floor as he feels helpless knowing that there is nothing
he can do to relieve it for me." Read more from Pam here